Friday, June 10, 2011

Exhausted, and not rightfully so as I was able to spend a full day yesterday in Sauna bliss, I am writing an update.

First if all, despite a nasty gastroenteritis Loki is doing well. On Monday I received a phone call from Loki's day care teacher, who sounded rather concerned. He was not "himself," cried a lot, threw up almost every syringe they administered and he felt quite warm. As I rushed myself to his day care many thoughts crossed my mind ranging from "maybe they have been giving him the shots too fast" to "is it possible that he caught the dangerous EHEC bacteria when we were in Germany last week." Since a few weeks Germany, and the rest of Europe, is captivated by a recent outbreak of a dangerous e.coli strain named EHEC. Most people "just" get a serious and very uncomfortable gastrointestinal infection. However, approximately 10% of those diagnosed with EHEC develop HUS, a life threatening kidney disease. With only one kidney, which isn't functioning optimally, this new outbreak scares the .... out of me.

Upon arrival Loki was not very alert, looked extremely pale and barely responded to me. I found out he had not had a wet diaper in 5 hours. My heart sank and my enemy, nauseated panic, tried to take over my system. Fortunately, I was able to pull it together, call the doctor and get us, safely, to the doctor's office. She suspected a typical stomach virus and was able to explain in clear and understandable terms why this did not look all that bad to her.

A) She immediately performed all simple tests excluding a diagnosis of meningitis (deep breath)

B) If he were to have EHEC we would have seen diarrhea as well (another breath)

C) If it were hydronephrosis, you would be surprised how I work this fear in to all kinds of scenarios, he would have had other symptoms e.g. edema (yes I know this but it still pops up, and yes another deep breath)

D) Of course, with all the throwing up he would not be peeing much (and yes diaper absorb so well that we may not notice these first little tinkles, pfew)

E) A regular gastroenteritis (stomach bug) was going around, even at the day care (wish I would have known that earlier)

After all these words I did feel much calmer. The doctor consulted with the hospital and was able to speak with Loki's specialized pediatrician (Dr. Draaisma). He agreed we should go home, give Loki tylenol, ORS (pedialyte) and check in with them in a few hours if A) Loki wouldn't tolerate de ORS or B) Loki wouldn't pee within a few hours.

And here we are, five days later and no hospital trip! Big Hurrah Loki, for facing this one like a champ who has no mercy with what this virus has to show for. Loki did indeed tolerate the ORS and he did start to pee. The only issues we are dealing with at this moment are his weight loss (boohoo loss of well earned pounds) and getting Loki to eat by mouth again.

Right before Loki got sick he was up to eating about 1/3 of his daily calorie intake by mouth. We are not there, not even close..... ! It is frustrating to feel like we have to "start all over again." I know we have built a solid foundation, we just need to brush off the sand and dirt covering it up and continue to move up.

I am incredibly grateful with how well Loki is developing. I am incredibly grateful with his increasingly stronger immune system with which he fights of bugs like a typical kid. But I have to admit that the one step forward and than a step back routine, especially with regards to eating and tolerating food, is tiring now and then.

Ending with a few recent quotes: "ik heb nieuwe chocola uhkregen van mijn mama," translating to: "I got new chocolate from my mama." "Nee, wille niet deur dicht, deur open moet," translating to: "no, I don't wanne door closed, door open has to be." His sentence structure reminds me of Yoda now and then. Now I come think of it, the boy himself reminds me a bit of Yoda. Especially his increasingly more impressive and elongated toddler tantrums!

About Loki Sky

Loki Sky is a special little man. He was a very early micropreemie, weighing only 610 grams (1 lb, 5 oz) after 24 weeks, 3 days gestation, born to an American Father and a Dutch Mother in Berkeley, California on October 18, 2008.

On January 11, 2009, while still in the hospital NICU, his one kidney stopped working. It was repaired after three surgeries. After spending time in three hospitals in three cities, Loki came home on February 17. He struggled with eating, and then stopped in July, leading to 8 days in the hospital, a failure-to-thrive diagnosis, and a NG feeding tube. On October 10, a minor surgery installed a G feeding tube. Another procedure replaced it with a new one, and then again with a Mic-Key button in Jan. 2010.